Y diweddaraf am COVID-19: Parc Geneteg Cymru


Yn unol â chyngor y llywodraeth ar COVID-19, ynghyd â’n sefydliad lletyol, Prifysgol Caerdydd, mae holl staff Parc Geneteg Cymru yn gweithio o bell ac yn ymaddasu i ffyrdd newydd o gyflawni ein rhaglen waith.  Er bod ein gwaith labordy wedi’i ohirio hyd nes y bydd hi’n ddiogel inni fynd yn ôl i’r gwaith fel arfer, mae cefnogaeth ar gyfer cynllunio prosiectau cyn y gwaith labordy a dadansoddi data yn mynd yn ei flaen.  Mae’r holl weithgareddau Addysg ac Ymgysylltu wedi’u gohirio tan ddiwedd mis Awst, ond mae’r tîm yn ystyried ffyrdd eraill o gyflwyno rhaglen o ddigwyddiadau amgen. Ewch i hafan ein gwefan a’n calendr digwyddiadau i gael gwybod am unrhyw ddigwyddiadau wedi’u haildrefnu. Yn ogystal, oes os gennych gyfrif Twitter, gallwch ein dilyn (@WalesGenePark) i gael y wybodaeth ddiweddaraf.

Os oes gennych unrhyw ymholiadau am weithgareddau Parc Geneteg Cymru, ebostwich walesgenepark@caerdydd.ac.uk

Gallwch gael diweddariadau rheolaidd am y sefyllfa ymchwil yng Nghymru drwy ein harianwyr, Ymchwil Iechyd a Gofal Cymru: https://www.ymchwiliechydagofal.llyw.cymru/covid-19/?force=2

Er na allwn ddisgrifio ein gweithgareddau presennol fel rhai sy’n mynd rhagddynt fel arfer, gallwn eich sicrhau ein bod ni yma o hyd ac yn gweithio’n galed er mwyn hyrwyddo a chefnogi ymchwil geneteg a genomeg yng Nghymru. Mae ein drysau, er nid yn llythrennol, bob amser ar agor i chi.

Cofion gorau,

Andrew Fry, Karen Reed ac Angela Burgess

Cyfarwyddwr a Chyd-gyfarwyddwyr, Parc Geneteg Cymru

COVID-19 update from Wales Gene Park


In line with government advice on COVID-19, and in accordance with our host institution, Cardiff University, all Wales Gene Park staff are working remotely and adapting to new ways to deliver our programme of work. This means that while our laboratory work will be postponed until it is safe for us to return to work as usual, support for pre-laboratory project planning and data analysis is ongoing.

All Education and Engagement activities have been cancelled until the end of August, but the team are looking at other means of delivering an alternative programme of events. Please check our events calendar and website homepage for notice of rescheduled events. Additionally, if you have a Twitter account, you can follow us (@WalesGenePark) for information and updates.

If you have any enquiries about Wales Gene Park activities, please email walesgenepark@cardiff.ac.uk

Regular updates on the research situation in Wales are available via our funders, Health and Care Research Wales: https://www.healthandcareresearch.gov.wales/covid-19-updates/

Although our current activities cannot be described as “business as usual”, please be assured that we are still here and still working hard to promote and support genetic and genomic research in Wales. Our virtual doors are always open to you.

All the best,
Andrew Fry, Karen Reed and Angela Burgess
Director and Co-Directors, Wales Gene Park

Health and Care Research Wales funding success


Wales Gene Park is delighted to confirm it has received continued funding from Health and Care Research Wales as part of its £44 million investment in health and social care research in Wales.

This funding will allow us to continue to support, promote and advance genetic and genomic research, healthcare, education and innovation in Wales. Further details of the investment from Health and Care Research Wales can be found here.

 

 

Genomics Showcase 2020


Wed 6th May, 10am – 6:30 pm, City Hall Cardiff CF10 3ND

Genomics Partnership Wales is taking over City Hall for one day only! Visit us for a FREE day of fun activities that will give you an understanding of the fascinating world of genetics and genomics, including:

  • Fascinating talks from genomics experts
  • Visit exciting interactive stands
  • DNA treasure hunt
  • Explore genomics through activities & games
  • Meet exhibitors from a range of organisations
  • Extract DNA from fruit
  • Investigate the DNA crime room
  • Discuss genomics & health at the Genomics Café
  • Genomics themed film screenings

This event is free and you can come and go as you please. However, if you do register via Eventbrite your name will be entered into a prize draw.

If you are interested in being involved with the event, or for further information, email walesgenepark@cardiff.ac.uk

 

Techniquest After Dark: Discover Genomics


Tue 31 March 2020, 6.30 – 10pm, Techniquest, Stuart Street, Cardiff CF10 5BW

Free entry! (includes arrival drink)

Genomics Partnership Wales is taking over Techniquest for one night only! Join us for an evening of fun activities that will give you an understanding of the fascinating world of genetics and genomics. As well as Techniquest’s hands-on exhibits, there’ll be plenty for you to do including:

  • DNA Extractions
  • Treasure Hunt & Quiz
  • Public Talks
  • Interactive Stands
  • Fully Licenced Bar

Free to attend. Book via Eventbrite

For further information please email: walesgenepark@cardiff.ac.uk

Organised by Wales Gene Park on behalf of Genomics Partnership Wales.

Welsh Rare Disease Day Film Festival Screening


17th March 2020, 6.30 – 8pm, Hadyn Ellis Building, Maindy Road, Cardiff CF24 4HQ

Before the screening there will be a Public Genomics Cafe at 5 to 6.30pm at the same venue – all welcome.

A screening of winning films from the Rare Disease UK Film Festival 2020. This screening will feature some of the winning films from the UK’s first ever film festival dedicated to raising awareness of rare diseases. The winning films were chosen by a judging panel across 6 categories including most innovative, powerful and inspiring film. If you are part of a charity or patient organisation, please feel free to use this as a networking opportunity for your membership in Wales.

This event is free but you must register to attend via Eventbrite: tinyurl.com/ud4t52r

There will also be an opportunity to join us for coffee and cake before the film screening as part of our series of public Genomic Cafe events being held across Wales. The Genomics Café – a relaxed, informal way to learn about new developments in the field of genomics and medicine – will be between 5 and 6.30pm at the same venue. All welcome! Register for the cafe here: tinyurl.com/skbeaz9

For further information, email walesgenepark@cardiff.ac.uk or call 02920 746940

 

Public Genomics Cafes, March: Llanelli, Cardiff & Newport


10th March, 10am -12pm Costa Coffee, (drop-in) Pemberton Retail Park, Llanelli SA14 9UZ

17th March, 5pm – 6.30pm (drop-in), Hadyn Ellis Building, Maindy Rd., Cardiff CF24 4HQ

18th March, 11am -1pm (drop-in), The Riverfront, Kingsway, Newport NP20 1HG

Are you affected by a rare or genetic condition? Are you interested in finding out more about genomics and health? Join us for the Genomics Café in Wales! This initiative is being run by Wales Gene Park and Genetic Alliance UK in collaboration with Genomics Partnership Wales.

The Café will be a relaxed, informal opportunity to meet with others and find out about new advances in the area of genomic medicine in Wales. It will also be a chance for people to come together and let us know how we can better support those affected by rare or genetic conditions. In addition to networking opportunities, the Café will host guest speakers, highlight new initiatives and provide attendees with the chance to shape our activities in this area. At these cafes, a guest speaker from Healthcare Science Wales (@HCS_Cymru) will give a talk about microbiology, the role of a Healthcare Scientist in the NHS and future developments in this area.

Refreshments provided!

This event is FREE to attend but please register via Eventbrite (you can also just come along on the day).

Llanelli Cafe: tinyurl.com/wmjq3pf

Cardiff Café: tinyurl.com/skbeaz9

Newport Cafe: tinyurl.com/sv6sdu6

 

Congenital Anomaly Register and Information Service (CARIS) Annual Report 2019


The Congenital Anomaly Register and Information Service (CARIS) was established in 1998 as a register of congenital anomalies in Wales, and has always included some rare diseases of genetic/hereditary origin. It sits within the Health Intelligence Division of Public Health Wales.

CARIS aims to provide reliable data on congenital anomalies in Wales which can be used to assess patterns of anomalies, including possible clusters and their causes and to inform the work of health services, including antenatal screening.

The CARIS Annual Report 2019 (Welsh language version) includes the prevalence rates of key congenital anomalies and rare diseases in Wales, with a focus on hips. The updated prevalence rates includes the Official Statistics release of 2018 data. Additional information about the annual report and data tables can be found here

 

 

Register now: Rare Disease in Wales – Senedd Reception 25th February 2020


Join Genetic Alliance UK and stakeholders from across the rare disease community for Rare Disease Day 2020! Rare Disease Day is officially held on the last day of February, aiming to raise awareness of rare diseases and improve access to care, treatment, information and support. Throughout February and March, we host our three annual receptions to mark Rare Disease Day in Wales, England and Scotland. This year the Welsh reception, sponsored by Angela Burns AM, will be held on Tuesday 25th February, 6-8pm at the Senedd, Cardiff Bay and registration is now open via Eventbrite

The event will include an update from the Chair of the Rare Disease Implementation Group, Dr Graham Shortland, progress made, plans for 2020 involving the Cross Party Group for Rare, Genetic and Undiagnosed Conditions, as well as personal insights from a patient affected by a rare pituitary condition.

Canapés and light refreshments will be provided. Please share the invitation with others who may have an interest in attending. Please invite your Assembly Member to join you at the Welsh reception to hear from inspirational speakers and to discuss issues affecting your community. 

For more information, you can also contact the  Genetic Alliance UK Policy & Engagement Manager (Wales), Emma Hughes – emma@geneticalliance.org.uk.

If you would like to find out more about ongoing activities, you can sign up to join the Rare Disease Patient Network by emailing: walesgenepark@cardiff.ac.uk

 

Rare Film Festival Awards Ceremony, London, 10th Feb. 2020: Tickets Available


Tickets are now on sale for Rare Film Festival! Held at the Regent Street Cinema, London, on Monday 10 February, the Rare Film Festival is your chance to take part in the UK’s first ever film festival dedicated to rare conditions. Tickets are available from £30 for Rare Disease UK supporters. Hurry as places are limited. Book your tickets here

About the Festival

Rare Disease UK is hosting the UK’s first ever film festival fully dedicated to raising awareness of rare diseases. We invited charities, companies, independent film-makers, students and individuals to submit short films around the theme of rare disease. Our judging panel will choose the most innovative, inspiring and powerful films and announce the winners at this glamorous event in Regent Street Cinema in Central London.

This is an exclusive event in celebration of Rare Disease 2020. We have invited representatives of all major stakeholders of rare disease community. You can expect a lot of charities, rare disease patients and patient advocates, researchers, healthcare professionals, film-making professionals, pharma and biotech companies, healthcare communication agencies, film production professionals and individual supporters. The doors will open at 18:30, giving everyone plenty of time to network and enjoy a welcome drink and some canapes. The Awards Ceremony will start at 19:30.